Ruminations – Page 2 – Riding a new Horse

Odds and Ends

Today was our first follow up with Dr. Oncologist. I am a candidate for Tomaxifen because of the type of cancer and that I can metabolize this particular drug. I am also a candidate because I am not prone to blood clots, I don’t smoke, I don’t take birth control. In addition to blood clots some other side effects include endometiral cancer (prevents one cancer and can cause another). Weight gain is also a side effect which thrills me to no end. Tomaxifen should start within 30 days of radiation ending. Some choose to regain some strength, others start right away. Tomaxifen is recommended for me because I’m considered premenopausal even though chemo put me into a menopause-like state. It will keep my ovaries in check. It could happen that once the 5 years is up, I might return to having periods again and go through ‘natural’ menopause at some other time. We were told today that if I only did surgery that there would be a 50% chance that I would remain disease free. Since we did chemo – surgery – chemo – radiation, there is an 80% chance that I will remain disease free. Well, actually she said a 20 % chance that it would reoccur. B and I both like to look at the 80% better than the 20%. She said people who are active do better in all regards most of the time.

The plan is

Start the Tomaxifen this week and take for 5 years.
Meet with Dr. Oncologist in one month (or sooner if I feel lousy). We can stop the med and wait a couple weeks if needed. We can also stop it all together and choose another drug if needed. Lab work at this visit to monitor liver functions and other things.
Meet with Dr. Radiation Oncologist in a month.
Have yearly paps to monitor for abnormal endometrial tissue.
Have a mamogram every 6 months.
Have a breast and chest wall exam every 6 months.
The first scan will be at 6 months to check on my liver, since there was initial observation of something there which was not thought to be cancer. She said that a lot of people at this stage ask why they are not getting more scans to see if there is any cancer. Here was her response: “We are not going to go looking for this. We do not want to expose you to any more radiation than you’ve had if there is nothing telling us that there is a reason to look for something. ” It has been said to us by Dr. Oncologist and Dr. Surgeon that the cancer was gone after surgery.

When I think of that last statement, my mind wanders. A part of me wants to say “how do you know?” I’m not much of a skeptic, and yet of course I want proof there is no evidence of cancer in my body. This is something no one can say. I don’t know. There was activity in some of the lymph nodes. This puts me in a different catagory than someone with no lymph involvement. The nodes are supposed to drain the system and yet they can also be the gateway into the rest of the body. It is my understanding that we don’t know if the cells that were found in the nodes were being drained out after chemo, or on their way to greener pastures. We do know that the pathology report said that at least some of the cells found were ‘chemo affected’ which seems to indicate that they were on their way out.

Meeting with Dr. O was a mixed blessing for me. It marked the end of aggressive treatments. It was yet another meeting where I’m in the petri dish with others and am part of the stats which mark the survival of the human with invasive breast cancer. I’ll keep you posted on the Tomaxifen effect.

Birthing Day

I have always taken my children’s birthdays off. They have the choice whether they want to take the day with me or not. In elementary and jr high school hanging with me was the choice. What we did was entirely up to them. This year on E ‘s birthday he and B went camping. Looking back, I’m happy to see that I blogged a bit on that day. At some point on birthing days, we all get together and talk about the birth of the celebrant. It’s so much fun to hear A talk about E‘s birth. (She was 2 1/2 and when she saw E hanging out in the pool of water, she was so excited and said “He’s got a ‘penus’ just like Daddy!” and B said, “Now everyone knows my secret!”) It’s so much fun to hear E tell the story of A‘s birth, even though he wasn’t even a blip on the radar. (She pooped great gobs of green meconium all over me minutes after she was born.)

A appropriately wanted to be with friends today, but we got to go together to the motor vehicle bureau to get her picture license. It was a cool rite of passage. Afterwards I picked up her car from school and took it away for a couple hours and put a few surprises in it, which she will be experiencing just about now. I’ve spent the rest of the day preparing her chosen meal and thinking about her.

This is one of those times when it seems that all the constillations have lined up in the right order. Radiation ended yesterday. A‘s birthday today, mine tomorrow, mother’s day on Sunday. Whether it rains, shines or blizzards, I’m happy. I met with my herbalist yesterday and am now on new herbs for boosting my immune system, detoxifying and energizing my body and mind. I will be doing a nutritional detox in a week or so as well. It’s spring, there is new growth as we come out of the time of rest and darkness.

I have thought a lot about our children, our nieces and nephews, the children of our friends and our children’s friends. I tend to get along with kids, and have loved watching all these young people growing up. Many of these people have known me for a long time, so I would imagine hearing of my diagnosis and seeing me change before their eyes might have been challenging to some degree or another. Seeing me vulnerable has made some others feel vulnerable, if that makes sense. In spite of learning that someone they love had a life threatening illness, in spite of my ups and downs, being tired, losing my hair, not being able to participate to the extent I usually do, they found strength to greet me with smiles, hugs, cheers, chats. Some broached the subject by asking to feel my head, or how I was feeling, or what it was like to have cancer. Some treated me like nothing was going on and this was wonderful. I want to thank all the young people in my life and in my children’s lives for keeping things moving along when our family was in a sort of limbo. This has been a long 9 months.

B had mentioned in an entry long ago that the timing of diagnosis and treatment was similar to that of our pregnancies. Childbirth for us was an amazing and energizing affair. Bringing these lives into our lives and learning together has been such a treat for us. Breast cancer diagnosis, treatment and now recovery is and will be a learning together. All of our supports are learning with us as well, still checking in, letting go of committments they took on to help us through with tenderness. We all have changed because of this. Birthing day, indeed.

“Last coat of pain”

I’ve noticed with increasing fatigue that my tolerance for mess at home is decreasing at the same time my ability to flit about and clean is. Why we chose this time to start renovations on a bathroom is beyond me but at the same time, I’m so happy we are continuing with the project. We usually negotiate with our contractor, doing some of the work ourselves. I had the job of priming and painting the ceiling and the walls, and it was time for this to be done.

To get to the point, the original color chosen but not purchased required gray primer. The ultimate color purchased was not dark. Covering the gray primer required more hutspa than the brighter color had. Layer after layer went up as the weekend wore on. I don’t love to paint, but I love it when a new color is added to a room. I never have had problems painting. I have not even minded cutting in. But as each layer was put down, a need for another rose up. I could not get myself out of the way to see that everything would be ok whether the painting was done or not. I was once again up in the bathroom, the last of the gallon in the tray, putting another coat on. I was spitting and sputtering about who knows what, definitely feeling sorry for myself. (This is fatigue in action here.) B came up, brave soul that he is, and I just kept ranting on. An hour later I went up and it didn’t look too bad. He stood in the middle of the room and said something smug like “you just have to trust the paint”.

Friends and I were spontaneously combusting into a gathering the following weekend and I emailed them all saying that I just had to put on the last coat of paint before I could release myself into their delightful presence. I left off the “t” in paint, and hence, the title of this entry. A friend picked up on it immediately, and I just had to laugh. The final coat of paint was less painful than the previous one was, I’m happy to say.

Doing projects like this is so rewarding when it is all said and done. Ripping out the previous bathroom had catharctic potential for both B and I. Seeing the new makes me very happy and the kids finally have a bathroom that they enjoy. Lest I not forget to mention the other outcome of getting teenagers OUT of our bathroom…

I am so grateful for B. When I’m not firing on all 8, he usually gives a wide berth. I may not always get what I THINK I need from him, but his timing can be so right on. I’m rationing my time between work, resting, putting up molding or vacuuming the living room. I call Mom or take a walk with D’s pups while she is away. I remember to stretch my body, put ointment on my radiation affected skin. I was the first to take a shower in the new bathroom. I snuggle up with the katz. I enjoy time with A while E is away on a week long trip.

I am working my way out of this particular trail. 12 days of radiation left. Not too much emotional pain, some annoying but not too intense physical pain. The bathroom and the still in process renovations to the bedroom are symbolic to me. You know, finishing stuff, attending to things I have some control over, letting go of the other stuff. I’m looking at the end of the really invasive and aggressive treatments. I’d like to think of it as the last coat of pain.

Exhausted

The daffodils brighten up my spirits, but I’m really POOOOOPED. I have no energy tonight. My skin is starting to itch. It’s very bizarre because I can feel the itch, but I cannot feel relief if I rub the area. The chinese salve helps a bit, a cool compress does as well. If the skin breaks down we know radiation is doing what it’s meant to do. It’s tolerable, but distracting right now.

I have to cut back on my ambitions, and I struggle just to let things slide. Maybe I feel like if the outside looks somewhat orderly, the stuff I don’t really have control over won’t bother me as much. Who knows. I just know that I should probably just REST in the afternoons and not try to be a hero, or whatever it is I’m trying to be.

Good night.

Getting things back

When we were visiting family for the holidays in December, I had the good fortune to see a friend, someone who is very much a part of our family. He was undergoing chemotherapy at the same time I was. He told me that he had a story to tell me. I received a card from him recently with the story written out. The card was a congratulations card with a sound chip in it. These goofy creatures called hoops & yoyo are on the front of the card and when I opened the card they said “congratulations!” in chipmunk like voices: “go do more of what you did, more good stuff, more good stuff, more good stuff, more good stuff…we don’t know what it is, but it was good stuff…congratulations!” and it made me smile and laugh. His inscription said “Have a smile today. Keep getting your “things” back!!” He signed it from he, his wife and 2 children.

Here is a portion of the letter:

“I have to keep reminding myself that the physical changes I’m going through right now are just temporary, thus the story of the card. When I first started my treatments back in September/October, I was told of all the side effects that I might encounter along the way. The constipation, diarrhea, mouth sores, hair loss, weight loss, loss of appetite, ability to swallow, voice change, etc…the list goes on and on as you well know. I said to myself bring it on, let’s get rid of this crap that found it’s way into my body. The side effects came, but always whe I was home, never while I was in the hospital. I can’t say that I didn’t struggle with my side effects, but as the holidays approached they subsided and eventually became a part of the past.

As weeks went on, I started to return to my more normal self. (My wife) and the girls can attest to that. And that is the reason for the card.

It was just around Thanksgiving, the girls were home from school, I was doing a puzzle at the dining room table. (My daughters) just got back from the store, needed school supplies, and disappeared to their upstairs bedrooms, only to reappear moments later with big smiles on their faces and a card in hand. I opened the card and almost cried for 5 minutes with them. They had heard of all my side effects, the troubles in the bathroom, my eating habits among other things, and in the card they assured me that what I was experiencing would be temporary, that I would soon be my normal self, and when I was able to eat a hamburger and french fry meal, or more than one meatball at a sitting, I should open the card and listen.”

He went on to share a bit about a celebration in the bathroom (I think I’ve written about my experience of this before), and the fact that he “expressed this joyous moment to (his wife)”…”I find myself opening the card when I achieve something, or is it getting something back? And I smile…when you get something back, open the card.”

Yesterday on the way home from treatment, I stopped at a convenience store close to home to get milk and eggs. The woman at the register has been working there for years and years. I had one of my baseball caps on, my curly fuzz peeking out, and she said: “You got your hair cut! It really looks cute!” I smiled a great big smile and thanked her as I walked out with my loot. As I was pulling into my driveway, I ran accross this sight:

Driveway-surprise-150x150

As soon as I got in the house I went to the card and played it over and over. My first complement on my hair since before September. That’s getting something back. Thanks M, for the card, the inspiration to celebrate, the support. Thanks whoever you are for the beautiful surprise daffodillies and forsythia in my driveway. Thanks, Mom, for the call tonight. We celebrated that today was day 13 of 33 for me. She told me she is one of 4 selected to be in a spelling bee for people ages 21 and up…is that cute or what? There’s a lot to celebrate. I love getting things back.

Radiation treatment #10 of 33 today

I’m moving along through radiation treatments. I can feel the fatigue right around 2pm or so. By now, 4pm, my eyes are doing the slinky thing. My skin is just starting to turn pink, there is no sensitivity yet. My hair continues to grow, I’m thrilled to say.

A suggested a while back that I might consider shaving my head when this is all over, to even things out and to mark the end of the treatments. I told her I’d consider it. Now I’ll say “if you want to shave your head with me, I might do it. If you don’t, I think I’ll keep growing it, thanks. ” I do need a bit of a trim, though. How goofy is that??! I can see the “curious George” widow’s peak once again. The short hairs on the top all fell out during that last episode of chemo treatments. Now I finally can see my hairline again. It’s barely visible, but it’s there. The fuzz has turned to kind of fuzzy curls. I wear my baseball caps mostly now, and it curls up around the edges. I was backing out of a parking lot at the grocery store the other day, and an older gent who was walking from his car waved me on and said “come ahead young fella”. I smiled. I remember when I first cut my hair short before the shaving party, and my friend S told me she thought I looked cute like a boy with my cap and short hair. It still makes me smile.

I’ve told people I work with to let me know if they think I’m losing my edge. Sometimes I feel really spaced out, more than usual. But I still feel like I can concentrate enough in the mornings, and spread my at home work out throughout the week. Rest time is so important, and getting back to work when I can is equally important. I’m not sure who decided on the 40 hour work week, but I think it’s crazy. Finding time to draw has been impossible basically, but I’ve been out in the garden which is nourishing on a different level for me. Last evening I put in spinach, radishes and lettuce and pulled up a carrot from last year. There was no where else I wanted to be.

We are planning a trip to Alaska this summer. I don’t know how long it’s been since we’ve done the family vacation, but it sure feels great to think about this time together. Our trip will mark a year from when we first heard the news about my breast cancer diagnosis.

18% finito

It’s strange, surreal, like limbo and at the same time not at all like limbo. I get up every morning. The 4 of us get ourselves out the door, some how close to on time. I head for radiation. I’m greeted, I change, I’m shown to the table/bed with the cradle that fits my arms, shoulders and head perfectly. I lay gazing at the suspended ceiling stars above me, and this space age machine hummms and moves around my body. A thin green laser like line helps to measure and align things. Very pleasant people are all around me at once, and then gone. I have my eyes closed most of the time to avoid the tendency to move my head to look at the next shiny object. I’m supposed to stay very still. They come in again and ask something about who I am, getting to know me as something other than whatever coordinates are associated with my name and date of birth. 5 minutes later, I slather myself with either aloe or Ching Wan Hung. I’m dressed for work, heading out the door with a raspberry Nutrigrain bar, courtesy of the cancer center. Today was acupuncture as well.

I head to work, getting into step with my colleagues when I land at whichever office. My schedule pushes my day forward from one meeting to another; supervision, client intakes, planning meetings, interviews with perspective clinicians. Before I know it, it’s 1:00, 2:00, 3:00…later than I intended and I’m back on the road heading home. Stop at the health food store for some nuts, the town office to register the car, and back home to make dinner before we leave for guitar lessons. Then I answer emails and rewrite job descriptions when we get home. One of the children may even crawl in for a quick snuggle before sleep takes us.

The only thing that makes this day something out of the ordinary is the first stop of the day. A parent’s schedule these days would wear anyone out. I’m not saying that my day is any more or less busy than any other parent. What I am saying is that it’s easy to forget that first stop as I get into the flow. At work I’m cheered on as my hair grows. SO much support…I’m told that I’m a goddess, amazing, resilient, unbelievable, and it takes me a while to understand why they are suggesting this. Going about my day I may get some other reminders: my hand may brush against my ribcage where a breast used to be, my ears may get cold as I run through the March rain and wind, I may have a hot blast and whip off my hat/scarf before I realize that I actually have hair now, I may look at my recovering hands and see fading reminders of chemotherapy.

Truthfully, the first many days of this type of radiation to this area of my body have not affected me to any great degree, or at least I do not notice it yet. I rated my fatigue as mild today during the once-a-week nursing visit. I rated my skin irritation as non existent so far, and was told that I’d likely start noticing more of both around 3 or 4 weeks into treatment. My blood pressure was the normal low, oxygen level was 100% as usual. So my point is that I don’t really feel like a cancer patient 98% of the time, and the in and out at radiation is almost forgettable by the end of the day. Once my appointments are in the early afternoon next week, it may halt the momentum a bit. I think that’s good. It will break my day, prevent me from scheduling at that very popular time of day, and I have blocked my schedule after those treatments with the full intention of heading home to rest and/or work. The food fairies have started to flit about again, and I think the timing is really good. It could be so easy to ignore fatigue. I and we are reminded of the awestruck feeling when our support net swooped around us last summer and fall. It’s still very much there, and so easy to take for granted.

I would imagine that it will be so easy, once this treatment marathon is over, to just slide back into life, but I have much to think about. There is a lot of information about what to eat to help avoid a reoccurrence. I am told that my energy will return in 2-3 months, so there’s the idea of actually getting back into an exercise routine. And there’s sleep, which fortunately has not been disrupted very much. These three things are so important to me. I think of the airline attendant who says something like “in the event of a decrease in cabin pressure, don your oxygen mask before assisting others”. If I’m going to be a healthy partner, mom, friend, neighbor, supervisor, manager, aunt, daughter, sister, pal, human, I will have to address my time and the many ways I nourish myself with great intention.

If I asked my family what this phase of treatment has been like so far, I wouldn’t be surprised if they said that life feels pretty normal. I think we all take pause when the reality of cancer in our family hits us at isolated moments. I don’t think there’s too much walking on eggshells around me. I could be such a G.O. that I don’t notice their caution, that’s true. We all have gotten used to this cadence, are in our well worn saddles, my boots have started developing some character. I wish I could protect my family from the ‘what if’s’, but I cannot. I wish my children did not have to think about or ever say that there is a family history of cancer. Wishing gets me nowhere. Moving ahead with intention is the only way we have gotten this far on this particular horse on this particular trail. Taking precaution when we can, attending to our health in whatever way makes sense to us, nourishing ourselves physically, mentally, spiritually, emotionally, these are some of the things we can do instead of wishing. Taking time to talk about fears when they arise, to be angry or sad when we feel it and to not miss the opportunity to laugh together, that’s how we can deal with this. Being present for each other, yea, there’s something to that there.

I have not yet spoken with my family about how long this blog should go. It is not my intention to have it ramble on. I have thought about this a bit lately. I definitely want to take it through the effects of radiation, and perhaps to my visit with my surgeon after my annual mammogram. I may visit the fitta to explore the idea of a prosthesis, and that may be interesting for someone. But after that, it may be time. I don’t know. Thoughts on any of this are welcome. Always.

CYP 2D6

Once treatments are over, many breast cancer patients with hormone-receptor positive cancers are recommended to take a drug called Tamoxifen for about 5 years. Our oncologist very wisely informed me that the Cytochrome P450 2D6 (CYP2D6) is an enzyme that is involved in the metabolism of numerous drugs, of which Tamoxifen is one. Here is some clinical information which may sound like blither blather to most, but could be helpful to people on Tamoxifen or for whom Tamoxifen is in the plan. Please understand that this is MY understanding and the purpose for putting it in here is to raise awareness.

Some people have inadequate CYP2D6 activity so these drugs may have reduced efficacy when these patients take them. Sometimes patients are not tested for this, and so it goes undetected. My oncologist asked for an extra vial of blood at my last infusion in order to identify whether or not I had adequate CYP2D6 activity. She told me that if I did not have adequate activity, she would recommend a different medication and one to essentially “shut off” my ovaries. (The idea of shutting off my ovaries struck me as something to avoid if at all possible.)

I think it’s also important to mention that many drugs can interfere with the CYP2D6 activity like some antidepressants and some heart medication, so that may be something to check out as well.

It amazes me that science can see this information in my blood. Although I’m really tempted to copy some of the lab report here just to impress readers, I’m going to spare you. It’s quite a remarkable report albeit full of words I cannot pronounce. The GOOD news is that my CYP2D6 is doing just fine and is considered in the report to be a normal metabolizer with extensive enzymatic activity.

I hope this helps someone somewhere.

Next up: the Verification appointment on Tuesday where we learn whether the sights and beams are set correctly to hit the targets and miss the rest of me.

Uno mas

I spent last night at home, just me and the katz. A had helped me put the first coat of paint on the bedroom yesterday and this morning before my 8:00 walk with D, I put half of the second coat on. I managed to fill my day with putzing and being outside. Now, with angel made lasagne in the oven, I’m ready to put my feet up and call my putzing complete. I love the color of the bedroom and was so happy to hear B’s reaction after he and E returned from cold camping.

At this point whatever was going on with my foot is much less, and after talking with my loving-angel-nurse-friend I feel better about the fact that it may not be Taxol induced. I’ve read that “Taxol toes” can occur even 1 year post infusion, so I’m not resting on my laurels, but each day that I’m not experiencing symptoms is ok with me.

Today my brother called to celebrate tomorrow being cycle 12 of 12. He asked if he was making a bigger deal out of it than it really was. I assured him that it is a big deal. Remember when the oncologist said that there would be 12 weeks of Taxol after surgery and thinking that 12 weeks was a heck of a long haul? And now here we are on the doorstep of #12. I’m excited for so many things. The last Benadryl. The last pre med that prevents my digestive system from doing its job. The last of a chemical that can burn my skin being put INTO my vein. I’m excited to meet my pal at the restaurant to celebrate after the infusion is over. I’m excited for every day after the 7th day because I will be the farthest away from chemotherapy that this bod has been in 3 months. I’m excited for my family at the THOUGHT that we’re that much closer to the end of treatments. I’m excited to have a Monday that I don’t go to the lab. I’m excited to put goodness into my body and not have anything take it away. I’m excited to plan a visit to visit my Mom whom I have not seen since December. I’m just excited to be able to plan something and feel relatively sure that I’ll feel “up to it”. I’m excited as we start talking about a real vacation this summer.

I know the treatment marathon is not over, but this is a big chunk.

Just Thinking

When I think about the journey so far, the thing that is dominant in my mind is love. I am not cancer. I AM loved. I feel it with my family. I see it when I read back in this blog at the story we are telling. The entries from B, A, and E are part of a love story. I see it and feel it in the comments made by supporters and loved ones. I hear it from others who are keeping up with the blog like it was some form of life support. That actually humbles me to the point of speechlessness. When someone refers to something I said in the blog, or tells me they finally got “caught up”, or that they are keeping up with it, my loquaciousness dries up like a dusty old tumbleweed and blows away.

I struggled to come up with something to write about today. I wanted to let readers know that breast cancer treatment is not ruling our lives most of the time. We are into our ‘normal’ which can be mundane at times. Since this blog is about the breast cancer trail, writing about normalcy during treatment seems apropos, but I don’t want to indulge myself too much and start treating it as a place to dump all the things that go through this brain of mine. No, no, definitely not. (This is to be said with the inflection of Mr. Olivander who was trying to find just the right wand for Harry Potter.)Someone may be compelled to perform experiments on me or something to see what exactly is going on in there.

Tomorrow is the second to last infusion of 12. I am beginning to think about what it will be like NOT going to the chemo suite and talking with the people I’ve developed friendly relationships with. My thought at the beginning was one of celebration, the good riddance syndrome comes to mind. But chemo in all of its chemical-ness, has helped me more than it’s hurt me. Oh, I will NOT be sorry to stop infusions. I won’t miss hearing the rhythmic timing of the machine that regulates the drip. I won’t be sad to say fare the well to the various and sundry manifestations of a body on chemicals. I AM struck by even the suggestion of the thought that there might be grief associated with the end of chemotherapy. Here I sit thinking about making a cheesebread to take to the chemo suite tomorrow as a thank you. It’s not my last infusion, but there are people I’d hate to miss if they are not working on that last day. I know I’ll be at the center for radiation in a few weeks, but this feels like an ending to acknowledge. There is a drawing I’ve been working on all along which I have not published, that may be framed as a donation. We’ll see.

The people who have worked on my treatment team, most specifically at this point on the chemo side of things, have been respectful, consistent, tender and real with me. They have many patients to deal with; some who are very sick, some who emotionally unravel in the chair, some who die. I feel like when I’m there we are chatting over a cup of tea or something when they come over just to see what exciting things we may have done over the weekend or tell me about the color they finally chose to paint their living room. I may be getting ahead of myself here, but I’m awake and aware of this feeling. I think it’s time to make some bread now.